hen Shanae Fuller gave birth to her son, Jerry, she hardly got to see him. She didn’t get to hold him, or listen to him cry. He was whisked away to a different hospital across town for emergency surgery. Even after the surgery, it was hard to make out the shape and feel of her baby. Jerry was wrapped in bandages and tubes and wires. His whimpers were muffled by the persistent beeps of nearby monitors.

Seeing her son in the neonatal intensive care unit, Fuller was overcome with a wave of anger. Anger at fate for bringing her and Jerry here. But really anger at the doctors and nurses. She was mad at her mom and her boyfriend. No one had prepared her for this.

“When I first seen him, his eyes was covered, his feet was covered, and his hands was covered,” said the 22-year-old Fresno woman. “So I knew that something was wrong, or something was different.”

Fuller didn't figure out she was pregnant with Jerry until her 19th week. She was on a very reliable contraceptive shot called Depo-Provera and visited her gynecologist’s office every three months for an injection. The symptoms that she noticed in those first few months of pregnancy, like slight weight gain and spotting, were also side effects of the contraceptive shot. Fuller was raising a 5-year-old daughter and had plans to find a path away from her Taco Bell job and back to college. It was a path that didn’t include another child, at least not yet. So when she finally took a pregnancy test, she was shocked. And she was disappointed.

Sponsored

“I was afraid of what people were going to say,” she said. “I was disappointed within myself, and my well-being, and where I was in life.”

She and her boyfriend tried to stay upbeat. Together, they went to their first ultrasound appointment, where they’d find out the sex of the baby. Her boyfriend cheered when they heard, “It’s a boy.” Fuller asked, “Wait. Are you sure?” Nervous excitement filled the air. And then the tone changed. There was mostly silence, as the nurse pointed out something that required the doctor’s attention. Fuller's baby boy had spina bifida. Ten minutes later, they faced a counselor who gave them an explanation of the condition. But the conversation didn’t do much beyond fill Fuller's head with jargon and questions.

Spina bifida translates from Latin to “split spine.” It’s a rare birth defect in which the neural tube, which houses the spinal cord, doesn’t close all the way. A bulge can form, made up of fluid, nerves and the spinal cord. Physical and even developmental disabilities can follow. It’s a defect that’s even rarer for Fuller: African-Americans are less likely to have spina bifida than whites or Latinos.

Fuller isn't sure if she might have learned something during those first weeks of her pregnancy that could have changed its outcome. She never took folic acid, for example. When women take folic acid in the first trimester, it reduces the risk of neural tube defects by 70 percent. Fuller had never heard how important it was.

The only thing that truly resonated from that first meeting with the counselor was that the medical professionals taking care of Fuller didn't think her son would survive. They gave her a few options, including terminating the pregnancy. Fuller is deeply religious and didn’t consider that an option for herself.

A hospital in San Francisco offered fetal surgery, an operation on the fetus’ spine in utero. Fuller said her insurance didn’t cover the cost of the procedure, which added up to $40,000. She and her family tried to think of way they might be able to afford it, but the brainstorming didn’t last long. It’s more than Fuller makes in a year, and travel to San Francisco put it way out of the question. That intervention wasn’t within reach.

So, Fuller could have a baby boy with spina bifida. Doctors warned of the statistical odds and the challenges she’d face. She heard that by continuing her pregnancy, she’d be “taking a chance.” She found it hard to prepare to be a good mother.

“It was hard to be happy. Because every day that I wanted to be happy, I kept thinking, ‘OK, maybe he's gonna die today. Or maybe tomorrow. Maybe he’s not going to make it,' " she said.

Fuller felt isolated in the experience. She didn’t know anyone else who faced this sort of challenge. People of color with disabilities, particularly those who fall under the poverty line, are not well represented in American media, in movies or in stories. In recent years, activists like Vilissa Thompson have made that clear with the popularity of a hashtag, #DisabilityTooWhite.

Fuller realized that to be the best mom for Jerry, she had to be his advocate. But it wasn’t easy. She was a young African-American woman without a college degree. Beginning with her first appointment, during which she found out about Jerry’s spina bifida, doctors presented her with jargon and little patience for explaining details. She takes a notebook to Jerry’s appointments, which she fills with medical words she doesn’t fully understand. She looks them up later.

When it came to making decisions about Jerry’s health, she often felt like the medical system didn’t want her input. She questioned doctors about whether he needed a certain surgery. She fought for Jerry to get his wheelchair and braces. She asked whether child care workers were being too hard on him.

She stayed optimistic, through one bad prognosis after another. “They said for his first birthday he wasn't going to make it,” said Fuller. “He's here. His second birthday he wasn't going to make it. He’s here.”

Shanae worries about Jerry’s pain. “I don't know how he feels on the inside,” she says. “And he's not going to say. He can't tell us.”

But Jerry is now 4 years old. He happily crawls around and sees a physical therapist to make progress toward walking. He’s closer to talking than doctors ever predicted. He counts and sings his ABCs. Jerry has brought Fuller patience and warmth. “He makes me feel all mushy inside. I just want to cry, not because I'm sad but because I'm just so proud and so happy of everything that he's accomplished in his life," she said.

Having Jerry has also made her interact with the medical system in a way she never did before. The medical system requires its users to have a lot of information: where to go, who to ask for, what to question, what to suggest. It's a system that, to her, seemed resistant to have her participate at all.

She said if she could, she’d work with children with special needs and be an advocate professionally. She lists her dream jobs: social worker, nurse, aide. But she can’t go back to school right now. She and her boyfriend are expecting another baby, a boy. She’s taking all the prenatal vitamins, trying to do it right. But she said no matter what the outcome of this pregnancy is, she knows she’ll be a good mom.